Jaclyn Jauhiainen Allergy Interview

National Progress in the Management of Allergies but More Work to Be Done

In the past two years the National Allergy Strategy has been implemented to support the 1 in 5 Australians affected by allergic disease. This important work has involved engaging with many stakeholder organisations, and has been possible due to funding support from the Australian Government. However, with allergic diseases among the fastest growing chronic conditions in Australia ongoing collaborations are key and funding support of the National Allergy Strategy is critical.

"The statistics regarding allergies in Australia are concerning and require serious attention. One in 10 infants now have a food allergy and food allergy induced anaphylaxis has doubled in the last 10 years," said Associate Professor Richard Loh. "Sadly, there have been many near misses and preventable deaths related to food and drug allergy. Just recently a young girl lost her life due to an allergic reaction to dairy. We need to learn from these tragic events and implement processes to prevent them from occurring again."

"The National Allergy Strategy was established to address the alarming statistics and improve the quality of life of all Australians living with allergic conditions. We are very thankful for the government support to date and input from many stakeholder groups. This has enabled us to agree on priorities and make significant progress in important areas requiring national attention including food service training and engaging teenagers. It is crucial that we continue this ground-breaking work and we encourage the Australian Government to maintain their commitment. We require $10 million dollars over 5 years to ensure that we continue to progress the National Allergy Strategy implementation."

Senator Richard Di Natale supports the need for a national response. "With more than 4 million Australians affected, we must have a coordinated, funded, national strategy and response. The risks are too great to ignore," Dr Di Natale said. "This is a critically important strategy and it must be supported at the highest levels to make sure no more lives are lost to allergy."

The National Allergy Strategy food allergen management in food service project has been particularly successful, with over 4500 people completing the free All about Allergens online training course launched in July 2017. This course provides comprehensive information relevant to the food service industry that is fast, simple and importantly, free. https://foodallergytraining.org.au

"The All about Allergens online training is being accessed and completed by food service staff across Australia. This is critical to ensure staff are equipped to respond to customers who disclose a food allergy and to manage their orders appropriately. The aim is for people with food allergy to have an improved quality of life and do the simple things most people take for granted, with reduced risk. The course also educates users on the symptoms of a food allergic reaction and what to do if a customer experiences a severe allergic reaction (anaphylaxis). The next step is improving food allergen management in food service across the community including hospitals and early childhood education and care," commented Maria Said, CEO of Allergy & Anaphylaxis Australia.

The National Allergy Strategy 250K youth website has also been a landmark development. The suite of online resources - '250K – A hub for the 250,000 young Australians living with severe allergies' - aims to provide age-appropriate information and resources to assist young people who are living with severe allergies. This project aims to help them feel more connected with other teens or young adults with similar experiences, in a fun but informative way. https://250k.org.au

"Teens and young adults are at the highest risk of fatal, food-triggered anaphylactic reactions5 out of any age group. For the first time, we have been able to begin engagement with young people living with severe allergy, particularly life-threatening food allergy", stated Ms Said. "We are excited that additional Australian Government funding for this project will allow us to establish a youth chat forum, conduct a youth camp and start a mentor program."

Aged Care Minister and Indigenous Health Minister Ken Wyatt AM said he was proud of the Turnbull Government's $2m contribution to initiatives covered by the National Allergy Strategy.

"This includes promoting the uptake of feeding and allergy prevention guidelines for infants, developing a standardised allergy content for food hygiene and improving allergy management for teens and young adults," said Minister Wyatt.

"I commend the tireless work of Allergy & Anaphylaxis Australia. The passion and dedication of this organisation to saving and improving lives is outstanding.

"From our youngest children to older people receiving aged care, we must continue working together to protect vulnerable Australians from the dangers and distress of allergic reactions."

While there have been many achievements over a short period of time, there are still many more gaps in care that need to be addressed. This includes improving drug allergy management in aged care and the wider community and improving emergency treatment of anaphylaxis Australia wide.

"As a national initiative with the best interest of the patient at the centre of everything we do, the National Allergy Strategy is able to progress urgent work to improve management of allergic disease. This work aims to significantly improve the quality of life of Australians living with allergic conditions and their carers, and better support health professionals, camp providers, food service staff, schools and others who are part of their circle of care. The next step is for the National Allergy Strategy to receive ongoing funding to allow this important work to continue" concluded A/Prof Loh.

Interview with Jaclyn Jauhiainen

Question: What are you allergic to?

Jaclyn Jauhiainen: Food allergies include cashews, pistachios, honey. I currently avoid all tree nuts as I do react somewhat to other tree nuts- such as walnuts. The extent of this is currently being investigated via what is called a food challenge.

Question: When did you find out you were allergic to cashews and honey?

Jaclyn Jauhiainen: I was eating dip at a friend's place one day and my mouth started to burn and get really itchy. Within the hour, I began to feel extremely nauseated and began vomiting. Food allergy had never touched my life before, so we passed this experience off as some kind of virus. It wasn't until I had dip at another occasion where I received the same symptoms that mum realised the correlating ingredient. My allergy to honey was uncovered a year or so later. I grew up eating honey but one day I noticed while I was eating it, how it felt familiar to the burning, itchy sensation I got when I have cashews. The next time I saw my allergist, my allergy to honey was confirmed.

Question: How does this allergy affect you, on a daily basis?

Jaclyn Jauhiainen: I think about my food allergies every day. Food is such an integral part of our lives. Before I put anything in my mouth, I have to know the ingredients. So, I am vigilant about what I eat. I have learnt to read nutrition labels and understand the terminology of allergen statements. Besides from my food allergies, I also have non-life-threatening allergies to cats, dogs, grass, dust mites and certain pollens. So I take antihistamines quite regularly to relieve me of the symptoms. Despite this, I try to perceive some of the setbacks my allergies have as positives. For example, I've learnt a lot more about nutrition. I am also very mindful of my environment and my communication skills have improved too. Over time, I have just learnt to adapt and accept my allergies. If I can't change them, I can limit their impact on my life and make the most of what I have. It's important to be cautious and aware of them, but they don't have to control my life. I have been so affected by my allergies that I am currently studying psychology with the goal to help others deal and manage their allergies too one day. It's so important allergic individuals feel empowered to live a fulfilling life- and with time and effort, it really is possible!

Question: How do you manage your allergy when eating outside your own home?

Jaclyn Jauhiainen: For me, eating out has been one of the most difficult challenges of having food allergies. A few years ago, I refused to eat out of my own home at all. I declined invitations when eating out with friends and family. For parties, I would eat beforehand and not consume anything there. For the first few months of eating at home only, I felt relieved as I didn't have to worry about having a reaction to anything as I was in control of everything I ate. However, I began to feel extremely isolated and exhausted. It really impacted my life. I was not happy and started to feel overwhelmed. The more I avoided eating out, the more I feared it. With the support of my family I started to understand that I needed to change this behaviour. I got in contact with Allergy, Anaphylaxis Australia and started to empower myself with my allergies.

Question: Have you ever accidently eaten food your allergy to?

Jaclyn Jauhiainen: When I was in high school I had a few minor reactions. I have also had an anaphylaxis before. I was eating at a restaurant and my meal contained nuts. When I first started eating the meal, I thought I was imagining the burning sensation as I was told my dish was safe for me. I continued to eat it. This was a complete misjudgement as within minutes my lips started to swell, and my voice become hoarse and I started to feel very nauseated. My sister administered the adrenaline and we went straight to hospital.

Question: How do you feel about the National Allergy Strategy?

Jaclyn Jauhiainen: The national allergy strategy is pivotal and fundamental to allowing individuals living with allergic disease to access reassurance that they are not alone. It is also crucial to providing others, such as businesses and persons working in the food industry, to build knowledge to know what to do when dealing with a customer who has severe food allergies. One of the initiatives of the NAS is a free, online food service training course about food allergies. Over 4500 businesses have completed the course and I highly encourage more to do so. Having knowledge about allergies and being able to deal with food allergic customers is a huge benefit to your business. Also, it really helps those with allergies feel safer to eat outside the comfort of their own home. Another initiative by the NAS is the 250k website. 250k stands for the 250,000 teenagers and young adults, aged between 12-25, who live with severe food allergies. This age group is also at the highest risk of death by allergic reaction. The resource has enabled people like myself to feel connected and supported by others who understand exactly what it is like to live with severe food allergies. It can be embarrassing and confronting to speak up about having food allergies- but it is crucial that we do. The website provides credible information to encourage the necessary skills when dealing with things such as eating out, travelling, dating and even how to recognise an allergic reaction. These amazing resources would not be possible without the NAS as well as the incredible individuals who work tirelessly behind these initiatives to help change the lives of those impacted by allergies.

Question: How can Australia support you and others affected by allergic disease?

Jaclyn Jauhiainen: The biggest thing others can do to support those living with allergic disease is to understand. We don't want sympathy- we just want others to understand how serious allergies can be and that they are not a lifestyle choice. Even more, the social and psychological impact of allergies can be really invasive. There are a lot of assumptions and stigmas in the community about allergies. For example, I've had dismissive comments when ordering food out in the past. I've had everything from eye rolls to belittling remarks. I don't choose to have allergies and I would rather not have them. However, I believe the initiatives that the NAS has composed so far, are making slow but definite improvements in educating others of the reality of allergies.

Question: What advice do you have for the parents of those affected by allergic disease?

Jaclyn Jauhiainen: From a social or psychological perspective, my biggest advice would be to get support. I think its really important too to find that balance between caution and 'life' when it comes to allergies. Communicate to family and friends about the struggles and challenges you face. Talk to a professional too if you are finding things particularly hard. It is not an easy situation but you are not alone. Empowerment and education go a long way. It is going to take more time before society at large truly understand the reality and severity of allergies. However, change is underway, and it will continue to get easier.

Interview by Brooke Hunter

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